Chronic Lyme Disease Summit 2

The Fibro-Fog Chronicles, Indeed

The day I was diagnosed with fibromyalgia was one of the best days of my life. I woke up in excruciating pain and crushing fatigue, more severe than that which I experience on most days. I had gotten the news a few days earlier that all of my tests had once again come back "normal" (from the neurologist, last Friday). And that fine Thursday morning, I was scheduled to visit my primary care physician for a follow-up.

I considered cancelling the appointment. What was the point, after all? I feel sick all the time, and few people believe me. "You look fine," remember? I really felt the appointment would be another colossal waste of time. The appointment was at 9:15, and I had learned by now to arrive at least 30 minutes early so that I wouldn't become part of the backlog of the overworked, albeit brilliant, Dr. F. This meant I'd have to leave home no later than 8:30 in order to drive to Worcester, get a decent parking spot, and walk the length of the very large hospital where Dr. F's office is located.

I stumbled into the shower and forced myself to take one. I decided not to drink any coffee, or eat any food. It was way too early. When I emerged from the shower, still in pain and totally exhausted, I remembered that I had not gotten the requisite "reminder phone call" the day before from the automated voice. This made me wonder, since the appointment was made not by the regular nurse but by a fill-in, over two months previously, if in fact the appointment was ever logged. At 8:15, I picked up the phone and dialed the office. I received voicemail, indicating that it was still Wednesday, Dr. F's half-day. Well, I thought, why not just drive there and if there is no appointment I can either ask to see the doctor anyway, or just go shopping. (The prospect of shopping not very enticing since I felt like crap).

Turns out that my appointment was scheduled, and I was asked to take a seat and wait beside a lovely young lady who, 20 years younger than me at least, was quite obviously suffering from a similar malady to my own. We even looked a bit alike, she a younger version of me, and taller. We sat together in silence, never making eye contact.

She went first, and then a few minutes later I was directed into an exam room by a male nurse whom I'd never met before.

When Dr. F came into the room, she took one look at me and said, "Oh! You're not sleeping!" I replied, "Yes, I'm sleeping straight through the night, but I wake up exhausted and in incredible pain."

"Tell me about the pain." she said. And so I did. And then I told her I had "a million" other symptoms. She asked me to recount those. I told her I would, but may not remember them all.

I never uttered the word fibromyalgia.

But Dr. F did. She asked: wasn't I evaluated by a rheumatologist for fibromyalgia at one time? I reminded her about Dr. B. who was "not very nice" and was "very dismissive of me". Then she asked, "Didn't we discuss fibromyalgia before?" I said yes, but neither she nor Dr. B. felt that I met the criteria.

She then explained that sometimes fibromyalgia needs a "wait and see" approach, and no one likes to diagnose it right away. She wanted to be sure I was still experiencing the same symptoms months later (and I am).

Dr. F. proceeded to poke around at the areas known in fibromyalgia terminology as "tender points". Yup, they all hurt. We had a lengthy discussion about all my other symptoms, and she prescribed some new medication saying it was approved for neuropathic pain and the crippling anxiety attacks I've been experiencing lately. Not Lyrica, but Cymbalta, another anti-depressant even though I'm already taking one. She took more blood tests "just to be sure", and away I went. With a diagnosis.

On the way out, I got a cup of coffee, some food, some water, and popped two Motrins. My head and back felt as if they were on fire. But I was on cloud nine.

August 2, 2007. One of the best days of my life. I can now move on. No more worrying about "what's wrong with me?" Now I can treat my symptoms, I can move forward, I am no longer stuck.

The first thing I did that night was to pull out all ten of my various "Fibromyalgia" books off the dusty shelf in the catch-all room upstairs. They were buried beneath books on the "mimickers" of fibromyalgia: Chronic fatigue syndrome, Multiple Sclerosis, Lupus, Lyme disease and adrenal fatigue syndrome, just to name a few. I had spent a lot of frickin' money researching these illnesses and syndromes, in my quest for answers. At one time or another, I was convinced that I'd had every single one of these conditions (not at the same time!). And I was tested for them all, and all those tests came back negative (more than once). But every so often, a little nagging suspicion would crop up and I'd think, "No, it's fibromyalgia, I know it is." Nevertheless, I subjected myself and a number of doctors to putting me through the tests to eliminate (or perhaps confirm) these suspects. Most recently, it was MS that I was convinced I had, since I've developed a lot of electrical feelings, numbness and tingling in my feet and hands, and have been tripping over my feet, dizzy beyond belief, and a host of other symptoms consistent with both MS and FM. The insidiousness of these invisible illnesses has not been lost on me. I have experience with another insidious disease: alcoholism.

I picked two of the ten books and started to read. It was not long before sleep took over, and so I only read a chapter or two of each book (I tend to read more than one book at a time, as has been my habit for years. Pick up one, read a little, put it aside, pick up the other...). Previously, I had only skimmed these books for items of interest, but had never actually read them.

The first thing I learned, and which I promptly tucked into a little place in my heart and head hoping it will remain there forever is that the pain of fibromyalgia just "is". It is not caused by anything I am doing or not doing, eating or not eating, drinking or not drinking. It isn't caused by stress, exercise, or overwork. It is exacerbated by these things, that is for sure, but the pain just is there (and sometimes it's not) and there is no rhyme or reason for it. It is unexplained, it is invisible to others, but it is real.

I'd been playing the "blame-game" for the past three years, trying desperately to figure out why some days I would be in excruciating pain in my shoulders, other days my feet would hurt, sometimes I wouldn't have pain at all (usually when I had a doctor's appointment!). Sometimes it'd crop up in the middle of the night, most of the time I'd wake up in pain, but then it goes away later in the day, other times it would literally bounce around my entire body: shoulder hurts for two hours, then foot hurts, then ankle, then a headache, then pelvic cramps. And then of course, the overall feeling of malaise. If you've ever had a hangover from drinking, you know how I feel on most days. It's been maddening. Was it lactose intolerance? Caffeine? Did I sit or lie down in a bad position? Did I ride my bike too hard? Did I walk the dogs too vigorously? Work too many hours? Sit at my desk writing for too long? Watch too much TV? Not move around enough? Is there mold in the house? Sick building at work? The questions and the worry were maddening.

It became imperative that I read and Googled everything I could get my hands on regarding these various diseases. A search of my Google history is horrifying, the obsession had overtaken my life. I would spend my spare time searching and searching. At times, I would give up and say "They're right. It's all in my head. There's nothing wrong with me." Only to wake up the next morning in debilitating pain unable to perform the slightest activity without having to lie down and rest, completely devoid of any stamina despite having slept eight hours without interruption. A once formidable force to be reckoned with, I had become reduced to someone with the energy level of a 90-year old. For heaven's sake, what would I be like at 90? I would wonder.

And to top it all off, I had developed chronic anxiety. Yes, this is another typical symptom of FM. I suppose that I "developed" chronic anxiety a long, long time ago in the form of "school phobia" as a child (oh, girls you will remember eighth grade!). School phobia is otherwise known as separation anxiety (not just for dogs, anymore!). You'll read more about that in my memoir.

And speaking of when did this all start and/or what caused it? Well, the official response is, doctors and researchers don't actually know. Personally, I can speculate and pinpoint some definite signposts. Some of it started in my childhood. Chronic migraine headaches by age 10, painful periods by age 11, vasovagal syncope (a fancy word for fainting) since that same time frame. Fast forward to age 15, when I became involved with an angry young man in a physically abusive relationship. That's in the book, too. Onward to bigger and better things (not!) in my 20s, I was a passenger in several minor automobile accidents, always and only being the injured passenger, and a major crash which resulted in head trauma, severe whiplash and a dislocated jaw.

In my 30s, the beginnings of chronic pain became known to me, and to my colleagues at work, as "Stress Neck". Co-workers could tell from across the room when I was having what I now know as a fibro-flare. "K2," they'd exclaim, "Are you having Stress Neck today?!" This affliction was quite often accompanied by a migraine headache and exhaustion so acute I'd have to go home and go to bed.

I took up bike-riding again (a childhood fave) in my late 30s, shortly before Timba's death. Often, after a lengthy bike ride, I'd develop what I dubbed "Take Your Breath Away" -- a horrible pain in the middle of my spine right between the "wings" area of my back, coupled with an inability to breathe and the added insult of what felt like a pulled muscle which would last several days. Now, in my 40s, I often get "Take Your Breath Away" just by lifting a shopping bag! (See post entitled "Shopping Bag Injuries" from a few months ago).

At 44, as recounted in the very first post on this blog, I came down with a strange virus after traveling abroad, and also got into two very minor "fender-benders" within a span of approximately four months time. I've been in chronic widespread pain in my entire body ever since, accompanied by indescribable, bone-crushing fatigue which itself also occurs for no apparent reason, and for which I tortured myself for three years trying to figure out what I was doing wrong that would result in my being so tired. The answer? Nothing. It just is.

The other symptoms are too numerous to list here, and they are also recounted in the first post on this blog. Perhaps I'll write more about those at another time. I will say that I know many people probably have thought I am depressed. After all, I've got this long, gray hair that I refuse to color or cut, I wear sweatpants and t-shirts, and I never wear jewelry, high-heels or makeup anymore. But I'm a happy person. Very happy. I don't have a mood disorder. I just hurt. Chemicals, clothing and jewelry make me feel bad or uncomfortable. I keep twisting my ankles, so there are a dozen pair of heels in my closet collecting dust. I take anti-depressants. They are prescribed for sleep and anxiety, not depression. I suffer from anxiety and mild panic moments (I won't say they're "attacks"). But I'm always in a good mood and often feel very pleasant internally. I'm a lot of fun to be around. I've got a good beat, and I'm fun to dance with.

Fibromyalgia just "is". That's what I learned during the past three days. I'm not doing anything to cause it, (and neither are you!). To coin a phrase that my beloved Gil hates to hear, "It is what it is."

There was a reason I named this blog "Walking Wounded: The Fibro-Fog Chronicles". You see, I've known all along that this is fibromyalgia, it just took a while for everybody else to catch up.

K2

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